This page contains information on a range of Australian Government services and initiatives that support people living with a disability. The information is intended as a guide only.

Information on additional services can be found at the Australian Government Department of Social Services: For people with disability page. Visit the State and National Services pages on the RARE Portal for more information on disability support as well as other support for families and carers.

If you or someone you care for is experiencing disability-related impacts from a rare disease, it is important to seek advice from a health or disability professional.

Rare disease support groups/organisations may be able to provide specific information and assistance in accessing disability support services for a particular rare disease. They may also be able to aid in facilitating equipment provision where necessary. The Rare Disease Directory lists relevant support groups/organisations for individual rare diseases, where available.

Rare diseases are often serious, complex and progressive, and many are associated with significant disability. Rare disease disability support needs typically extend beyond health and into social/welfare services, mental health, education, employment, housing and disability.¹ Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability.^2,3 Learn more about rare disease disability at Rare Voices Australia’s website.

Disability Gateway is an Australian Government initiative assisting all people living with a disability, their families, and carers, to locate and access relevant information and services across Australia.⁴ It provides information on a wide range of state and territory services, including health, housing, employment, transport and everyday living.

Carer Gateway is an Australian Government program that provides free services and support to people caring for a family member or friend with a disability, medical condition, mental illness or someone who is frail due to age.⁵ The Carer Gateway: Services and Support page has information about available support and services, including who is eligible and how to get access. There is also a list of Carer Gateway Service Providers (Australian health and carer organisations providing services for carers).

Additional resources for carers can be found on the individual State and National Services pages on the RARE Portal under ‘Other support for families and carers’.

Services Australia is an Australian Government agency that supports Australians by delivering accessible services and payments.⁶ The following resources are available on their website:

• Services Australia: Living with Disability – information on the payments and services available for people living with a disability, as well as resources for help and support available in the community
• Services Australia: Caring for Someone  – information on the payments and services for people providing temporary or ongoing care, including when taking time off work to care for someone

The National Disability Insurance Scheme (NDIS) is Australia’s national scheme for people with a permanent and significant disability.⁷ It provides funding directly to eligible Australians with a disability under the age of 65 years when they apply. Australians already on the NDIS before they turn 65 can choose to remain on the NDIS or move to Commonwealth aged care supports, although they cannot access both at the same time.

What Will the NDIS Fund?

Information about the supports funded by the NDIS is provided on the NDIS website. The NDIS provides funding for supports that are directly related to a person’s disability impairments and are considered reasonable and necessary to help people with a disability to pursue their goals, increase independence, and participate more fully in everyday life, including social, community, study and work activities.⁷

Accessing NDIS Funding

To access NDIS funding, people must check their eligibility before submitting an application. Eligibility is based on age, residency, and disability or early intervention requirements.  Evidence of a disability from medical providers and allied health professionals is usually required to demonstrate eligibility for the NDIS and the person’s support needs.⁸

NDIS: For participants includes information for people applying for NDIS support. It also includes information for current participants about creating, using, or changing their plan.

Other useful information and NDIS-related resources:

• First Nations Connect is a phone service for Aboriginal and Torres Strait Islander peoples and their families, representatives, health workers, and community organisations.  This service provides a more culturally respectful, tailored experience with the National Disability Insurance Agency (NDIA).   Contact number: 1800 411 640
• Rare Disease Disability Toolkit: NDIS and Rare Disease Disability – Part 1: Accessibility and Eligibility
• Multilingual Information Access (MiAccess) brings together available translated information and will support access to the NDIS for people whose first language is not English.
• Kiind: NDIS
• Belongside Families: NDIS resources
• Every Australian Counts: Your NDIS

In Australia, people living with a disability who are over the age 65 may not be eligible for the NDIS and will need to seek support through government aged care services instead. Services Australia: Getting aged care services provides information for older Australians requiring help in their home or support to move into an aged care facility, including for those with a disability.

My Aged Care is an Australian Government service that facilitates access to government-funded aged care services.⁹ Individuals must be aged 65 years or over (50 or over for Aboriginal and Torres Strait Islander people) and demonstrate a need for assistance with everyday tasks to qualify for assistance. Individuals may be eligible if they have:⁹

• Noticed a change in ability or memory.
• Been diagnosed with a medical condition or reduced mobility.
• Experienced a change in family care arrangements.
• Experienced a recent fall or hospital admission.

The first step is to apply for an aged care assessment, which includes evaluation of eligibility. Assessments are conducted in person, usually at home.

The My Aged Care website also has information for families and carers, as well as health professionals. It provides information about available service providers, as well as an estimation and explanation of the costs that may be incurred.⁷

Australian veterans with rare disease disability may be eligible for additional support through the Australian Government’s Department of Veterans’ Affairs if their rare disease disability is related to their Australian Defence Force (ADF) service.¹⁰ Veterans will need to provide evidence that any injuries or health conditions that they wish to make claims for are service-related. Treatment of certain conditions, including mental health conditions and cancer, is fully covered, without the need to demonstrate that these conditions are service-related.¹⁰

Visit the Department of Veterans’ Affairs: Access benefits for more information.

The Australian Government’s National Disability Advocacy Program (NDAP) provides advocacy support to people with a disability. Funded by the Department of Social Services, it aims to promote and protect the rights of people with a disability and help to remove barriers to allow full participation in society.¹¹ Advocates assist individuals in navigating complex challenges, providing information, exploring options, and making informed decisions.

Read the Disability advocacy for individuals fact sheet to learn more about how an advocate can assist people with disability.

Some NDAP organisations provide support for people with specific needs, circumstances, or backgrounds, including:¹¹

• People living with a specific type of disability, such as intellectual disability
• People who need help with specific issues such as housing, education or employment
• People from culturally and linguistically diverse backgrounds
• Aboriginal and/or Torres Strait Islander peoples.

Ask Izzy is an online Disability Advocacy Finder tool. People with a disability, carers and their families can use it to search for independent disability advocacy providers in their area.

Palliative care services are available for people (adults, children and their families) living with a life-limiting illness. Palliative care is available at any stage of illness from diagnosis onwards and is not necessarily solelyfor end-of-life care. This may be relevant to some people living with rare disease disability, as palliative care services provide assistance, support, resources and tools to help people manage their illness and symptoms, ease pain, and improve comfort and quality of life. Further information about palliative care can be found at:

• Australian Institute of Health and Welfare: Palliative Care Overview
• Australian Government Department of Health, Disability and Ageing: Palliative Care
• Palliative Care Australia
• Department of Developmental Disability Neuropsychiatry (3DN): Tailored model of palliative care – a framework for the delivery of tailored, quality palliative care for people with intellectual disability in Australia.

• Rare Voices Australia: Rare Disease Disability Toolkit  includes resources for peer support, building capacity in disability rights and self-advocacy, and helping people access and navigate disability and other systems, such as health, education and employment.
• Multilingual Information Access (MiAccess) is a website that brings together high-quality translated information about disability and the NDIS. It aims to inform and empower people with disability from culturally and linguistically diverse (CALD) backgrounds to access information that is essential in both understanding disability environments and accessing the NDIS.
• FPDN – First Peoples Disability Network is the national peak organisation for First Nations people with disability, their families and communities.
• National Centre of Excellence in Intellectual Disability Health: Our Health Space – a resource for people with intellectual disabilities to find information about intellectual disability health, learn from other people’s experiences and access resources and information provided by the Centre.
• Comprehensive Health Assessment Program (CHAP) – Annual Health Assessment for People with Intellectual Disability is an evidence-based tool for conducting annual health assessments for people with intellectual disability in Australia. There are free versions of the CHAP available for adults 18 years and over, and young people aged 12 to 18 years.
• GeneEQUAL is an inclusive program that works on projects in health and education with people with intellectual disability. It aims to improve genetic and all healthcare better for people with intellectual disability.